Request for info from those taking Nuedexta

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lgelb

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Reposting an edited version, so I have hyperlinked Dr. Servera's e-mail below for those who wish to respond to him:

My name is Emilio Servera, and I am the head of the Pulmonary Medicine Department in the Hospital Clinico Universitario in Valencia, Spain. I also run the Research Group for Respiratory Problems in Neuromuscular Diseases at the Institute of Health Research INCLIVA.

There are some evidences that Nuedexta may have positive effects on the progress of bulbar involvement. Considering that, in our Pulmonary Medicine Department we are going to use Nuedexta on ALS patients that ask for it with the goal of increasing the length of NIV usefulness and delaying the moment at which NIV becomes ineffective because of bulbar dysfunction.

Since data available regarding its safety and effectiveness are still very scarce, I would like to ask those ALS patients that are already taking Nuedexta to give us any experience of its effects and any safety issues that they have encountered.

Thank you very much

Emilio Servera MD
 
I'm not on Nuedexta. My neurologist suggested trying just an SSRI for my bulbar symptoms. The SSRI (Escilatopram) does seem to help. But, if there is any possibility of slowing progression maybe Nuedexta is worth a try? Has anyone else heard about slowing progression?
 
Nuedexta improved my ability to swallow for 6 months, and I can still talk. The rest of my bulbar area is a mess
 
My swallowing is better especially with water since taking Nuedexta. speech isn't better but my tongue movement is
 
I've been taking Neudexta for about 6 months. I also have bulbar onset ALS. The original dosage called for 2 tablets per day, which I took. I didn't notice any change in my bulbar functions, but my PBA disappeared. So I cut back to one per day. Again no change. The PBA is still gone. Now I cannot speak, eating and drinking is a chore, and my tongue is almost completely dead. I'm thinking of going back to 2 per day for a moth or so to see if it has any positive effect on my bulbar symptoms. And no side effects.
 
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