upcoming clinical trial of Mexiletine

[edjohnson]

If you plan to attend this webinar On Friday at 2 PM EST:

upcoming clinical trial of Mexiletine in patients with sporadic ALS
https://www1.gotomeeting.com/register/791699817

you will be able to ask questions if you are registered to attend. Suggest As many attendees as possible ask a version of these 2 questions:

Question 1, we know the FDA is open to new ideas, will you ask them to allow the trial to use historic placebo data rather than a new arm for placebo data? Eliminating the placebo arm will not harm the integrity of the trial results but will Eliminate expense and a burden on ALS patients, While preserving patients for other trials.

Question 2, Will you be willing to use the new algorithm that allows previous trial data to be used to shorten current trials, the algorithm recently Won the prize for life?

 

[JustMeHere]

This can be a very dangerous drug. It has a high rate of causing arrythmias and heart attack. Not to mention lot of other big bad side effects. It is very hard on your stomach, can cause your blood pressure to drop dangerously low, and cause breathing issues. It is typically given to patients in the hospital with life threatening arrythmias. It's given under monitoring because of these issues. Thats something to take seriously. It's got a black box label.

My cardiologist is afraid in light of this study people will rush out and try to get it not really knowing what they are signing up for. It's not something you want to take at home without prior monitoring and monitoring throughout because the rate of nasty side effects is high. The safety of this drug will be an issue. The study is so young too. Not a drug I'd want my loved on experiementing on at home on their own. This shouldn't be taken lightly. :shock::-|

 

[mommy2boysNC]

I'm planning on watching the webinar. We have heard the same thing here. We asked a pharmacist friend about it after we read for ourselves. My husband talked to his gp about it Monday while he was there getting some meds filled. He said you have got to be careful with anti-arrhythmia drugs and especially that one. Looked it up right in the room.

Glad I stumbled upon this. I heard about it a few weeks ago and I was up surfing the net tonight because I could not SLEEP! Again

I really hope that soon they will stumble upon a drug!

 

[mommy2boysNC]

One more question. When did this trial start?

 

[mommy2boysNC]

Oops! My first post didn't post. Been a while since I have posted. Perhaps I messed up. Was just saying we have read the same info as Just.

 

[Bad Balance]

Soradic ALS?
Either you have it or you don't, eh?