Denied! Essential3 Study

If you’re on Facebook, you’ll likely see ads for a new, third stage study for a new drug trial in treating Essential Tremor symptoms. Called Essential3, this is the third round of clinical trials adhering to FDA guidelines. I know this because I get texts from my friends every week when this pops up on their feed. “Have you heard about this???” Yup. I was a strong candidate for the program until I wasn’t.

I had read the first two stages’ findings and this looks promising. I made the first three screenings, and even if I was given placebo, I was excited to at least contribute to data.

Fourth (and final review) included signing releases and having my neuro (MDS, or Movement Disorder Specialist) send over my records. Unfortunately, I have a secondary neurological condition called chorea, which is violent jerking of limbs. This condition excludes me from the trial. Bummer.

But, having Chorea was news to me. Not too familiar with this so going to meet with my doctor to learn more. But I have to say the study seems promising. First two trials resulted I believe in a 30-40% or so reduction in severity of tremor. With few side effects. The trial drug is called ulixacaltamide.

The drug company is Praxis Medicine, which has developed a number of drugs for neurological conditions. Well funded as well, over $400 million US going into this program. 

The other reason why I was attracted to this program is that the nurses literally come to your home to evaluate and take vitals as many with ET no longer drive or are limited in driving, so it would be harder to get this data from patients if they had to get to a clinic on their own.

The clinicians and follow-up has been superb. Friendly, informative and very clear with instructions and very caring. And the screeners are NOT your generic call center folks - the KNOW ET!

If you have ET or have a loved one with ET who may be interested, you can click here: Essential3Study