Status
Not open for further replies.

Chumpy

Active member
Joined
Dec 23, 2014
Messages
42
Reason
CALS
Diagnosis
11/2014
Country
US
State
Texas
City
Fort Worth
Any information on this would be great! PAL has Bulbar ALS, but not the laughing and crying. We've heard good things on the bulbar side, but concerns on side effects! Please share your experience with this medicine!
Speech is almost gone, swallowing barely, FVC 40% so diaphragm is getting weaker! Doctor wants PAL to have tracheotomy, currently using Trilogy 100 with mask.
Thank you all in advance!
Robyn & Jon
 
There's much info stored in previous discussions, have you tried a Search?
 
There have been many who have sang the praises of nuedexta, however I believe it was early in their diagnosis when it showed promising results. I tried it early on but it completely tore my stomach up.

Vince
 
My Wife has been on it for 5 years Now. We started it when she was having the laughing and crying events and it helped a Huge amount. She has never complained about any side effects. Hope my 2 cents Helps a little.
 
I've been on it for about a year. It has really helped with the laughing/crying. I would respond appropriately, but couldn't put the brakes on, so to speak. I haven't noticed any side effects at all from this. Started with 1 per day for about a week or so and then went to 2 per day.
Dianne
 
I would give Nuedexta a thumbs up from what we have seen. We read that it can help with the swallowing and speech functions (in additional to the laughing/crying filter). I'm not sure if that is true, but swallowing difficulties have seemed to level off. It's so hard to say with these meds because you never know what it would have been like without the them. No side affects that I can tell. Rilutek on the other hand messed my PAL's stomach up so much we have quit it twice now.
 
At our support group Nuedexta was discussed and one person with PBA was very frustrated by the cost and it only being available as a pill. He has not decided if he wants a feeding tube so he can't swallow it. He has been taking dextromethorphan and quinidine sulfate as a much cheaper alternative and liquid and crushable and has relief from the PBA. He has however, concerns about his ability to cough. Even with his Cough Assist, he isn't able to clear his lungs and throat. Because dextromethorphan is a cough suppressant, he is wondering if it is thickening his secretions. Is Nuedexta or dextromethorphan actually bad for ALS patients because they have a weakened cough as well as PBA or speech/swallowing problems?
 
Last edited:
My Wife's Nuedexta comes in a Capsule.. As she has a Peg Tube I simply open the capsules contents into her Feeding and that's it. Hope this Helps
 
I have read thru the past posts. Just wanted newer information of available . Thanks for the heads up!
At this point anything is worth a try!
 
My husband's "favorite" med (and he takes a lot) is Neudexta. He has noticed a marked improvement with emotional lability while taking it. A missed dose or two becomes obvious to him. Before starting on it he was having so much trouble that he began isolating some--didn't want to go to the movies or anywhere he might encounter any emotional triggers. That wasn't good, but Neudexta changed that. I also just open the capsule, mix with a little water and put it through the peg. His Medicare and Part D covers it with modest copay.
 
Taking Sertraline for PBA. Working, with no noticeable side effects.
 
Status
Not open for further replies.
Back
Top