Anyone on the Dexpramipexole trial?

[susanf]

Good idea! I feel more tired , less twitches.

 

[frankb]

Going in for my 2-week checkup next week. Have noticed the muscle tremors are more numerous but less strong. Also, muscle cramps are more numerous, but also less strong. Pills are fairly small. Hope they are the "real" thing ! !:smile:

 

[StillSteve]

I started last Thursday, so I've completed one week now. If I'm having any side effects at all, they are very minor. I have had some insomnia, but I hadn't really thought of it as being anything of significance until reading this thread just now. Maybe, I guess. There's no way to know.

I started on riluzole June 3rd, and haven't notice any obvious side effects related to that either. At times I feel that my fatigue is getting worse since I started it, but then again, of course it is.

-- Steve

 

[Shankopotomas]

I've been on the dex trial since last thursday as well. I'm not sure if it's related or a side efffect, but I sort of like there's some phlegm in the back of my throat that just sits there... I don't think I have a cold or anything, but who knows.

 

[Sequoia]

Just got in for the preliminary interview and testing for this drug in Fresno, CA...I have to fly everyother month but I want to go for it if my breathing is up to par. There was one here in Seattle but my als clinic never notified me....im mad about that!

Pray I get in!

 

[tdodson]

Good luck! I can't believe the clinic didn't notify you but at least you found an alternative site.

 

[susanf]

I would still call the clinic out on that one, Sequoia. There is no excuse for them not notifying you.

 

[momap53]

MCG in Augusta, GA is hoping to start the trial sometime in 2012.

 

[Georgia Peach]

We hope to get appointment times next week at Emory. Scott passed the preliminary interview and labs.

 

[HelenL]

Good Luck Georgia Peach! I've been on it for nearly 3 months now, and have had just enough side effects to think that I may actually have the real thing... no way of really knowing of course, but I do feel fine.

 

[tdodson]

There have been a few weird side effects or issues since Mom has started the trial. Her face turns red about 30 - 45 minutes after taking the pill. Mostly her cheeks and nose but consistently happens around the same time after each dose. and She now has night sweats. During the middle of the night she will wake up hot and very sweaty. She doesn't sleep well either. Not sure if that is the drug, the pain in her shoulder, or ALS in general. She can sleep for 1.5-2.5 hours and then wakes up. Stays awake for about an hour or hour and a half before she can sleep again. Does any one else have the same issues?
I never know what is ALS, trial, or something else anymore.
On a brighter note I do think Mom's voice is doing better since starting the drug. It rarely sounds weak and before it was weak most nights we talked. Who knows though.

Good luck to everyone!
todd

 

[Bad Balance]

Friday is my screening interview at Emory.

- Jerry

 

[Sequoia]

Good luck, Jerry & Georgia Peach!

I am having one heck of a time doing the beathing test...the computer they are using just wont calibrate my breath test...I tried it 6 times one day and 6 more times yesterday...really exhausting me with all that blowing. The doctor tried it on herself and it failed also. But the high tech guys said it was me, that my first rround of normal breaths before the big one were too deep so the machine doesnt pick up the big one....doesnt make sense to me. So this morning I am going back one more time to try it again. Pray I get through this will ya? If I dont, then I may try for the NPOO1 trial in Olympia, although there breath test has to be at 70...that was my score last clinic, but who knows now? after all this huffing and puffin to blow the house down...lol..

 

[Sequoia]

Well, guess what. I got a call from the nurse at the trial clinic and she said the numbers were all wrong in calibrating the breath test so I passed the breathing test with flying colors....all 15 tries at it....then I got a call saying my liver count is up and i have to go give more blood and have a liver scan....in case something serious is wrong with my liver....I dont think so, but I will follow through so I can be in this trial.

Thanks for your loving thoughts and prayers

 

[Sequoia]

Still waiting to hear the results of liver scan...will let you know if I get in!