dexpramipexole DRUG TRIAL ENDS IN oCTOBER

HELLO FOLKS, WE NOW WILL GET THE REAL dexpramipexole....AT THE END OF THIS TRIAL!
I THINK IT WILL BE IN OCTOBER WHEN WE GET THE REAL DRUG.

FOR THOSE OF YOU WHO HAVE HAD THE REAL DRUG, HOW LONG DOES IT TAKE TO TO SLOW THE PROGRESSION DOWN? I AM HOPING THAT I DO NOT LOOSE MY ARMS AND HANDS BEFORE THE DRUGS KICKS IN!

That's exciting! I can't find the info online. Are you sure? It gives me hope

Can someone that hasn't participated in the trial get Dex?

It wouldn't be available for non trial people, until the studies are completed and it comes on the market. Bad news I know. Hopefully some interim results will be out soon, so that there is some idea of its efficacy.

Their are 25 patients in the dex trial including myself who are recording their progress on the web site PatientsLikeMe.Not one is recognizing any slowing in progresion.Expectation was 30% slowing but it is not being realized.

can some one who has taken dex. give me a guideliine for when it takes eaffect in slowing down progression?

My severe cramps and fasiculations stopped probably in the second month. However, at the 12 month period I am noticing more leg cramps occurring when I stretch. Also, hand cramps are more noticeable lately. Other than that, I have been fairly stable (which is a darn good thing). However, I don't know if I am on the real thing or not, but with a drop in my WBC at the firs month "weigh in" the chances are that I have the real thing. Best wishes to all ! ! !

*bump*

Great news

S o two months into dex you saw improvement frank? Thats great! I hope it slows down my losing my arms and hands!

pals react differently to drugs. i would think if a few can positively say it slows progression it offers hope to thousands of others. look at the stem cell trial, they highlite one patient but it sure provides hope. one in fifteen, apply those odds to the general population and we will be jumping for joy

I have my final clinical trial appt on Oct 4th, at which time I'll get the study drug... it's a 2-hour appt. as they have you take it, and then watch you to ensure no adverse reactions... I think I've been on it all along, due to a couple of side effects, but wouldn't it be nice if I wasn't and when I take it my progression stops? Wishful thinking

Hope helen is what we hang onto.....!

Definitely!

Hi..

I am not sure.. but some where may be on this site itself.. i have read that Dex is available in some quantity in cough suryps... is it really true?

I think Dexpramipexole is a combination of a couple of meds..one of them being the same med as robitussin..the other being a variation of a prescription medication.