About to start Nuedexta and have questions.

[DW96]

I have bulbar onset and have pseudobulbar effects as well, too much saliva etc. and so first they put me on Amitriptyline and that didn't really do much so now I have the prescription for Nuedexta. Didn't know what anyone experienced for side effects and if I should take before bed or in the morning etc.

 

[affected]

Does the prescription tell you how often to take it? Usually, I think (sorry others will have their own experience replies, we could not get this here in Oz) it is prescribed twice daily, like every 12 hours, so you would usually take it morning and evening.
Apologies in advance if that is not correct.

 

[lgelb]

Per the package insert, the first week should be once a day. It is a drug with many potential interactions and side effects so they want you to start slow. In addition, for example, anyone with family or personal history of heart disease or abnormal rhythms should work closely with your doctor.

"The recommended starting dose of NUEDEXTA is one capsule daily by mouth for the initial seven days of therapy. On the eighth day of therapy and thereafter, the daily dose should be a total of two capsules a day, given as one capsule every 12 hours."

Past that, the time of day is something you can adjust to your needs while keeping the interval regular.

 

[affected]

So Laurie, the question about whether to take it morning or night? Thanks for clarifying about starting it as once a day. I truly wish we could access this here in Oz.

 

[jethro]

zoloft (SSRI) does the same in most of the pals, and is much better. morning is he best time.

 

[Nikki J]

I disagree zoloft is better for true pba. Nuedexta has anecdotal and study evidence of transient ( about 6 months) improvement in bulbar symptoms especially swallowing which alone makes it different than zoloft.
my sister found it helped a lot with her emotional lability and said it was the drug that helped most with quality of life. I am not sure it matters when you take it for the first week. I like to take new non sedating things during the day so I can observe effects but only if I am not going out

It may not do a lot for saliva though other than any small swallow improvement. There are other treatment options for that if you need them

 

[GXTrex]

Is Nuedexta only for pseudobulbar effects? My dads emotional state seems good but can it help with swallowing?

He is also switching antidepressants from lexapro to zoloft.

 

[Nikki J]

It is only indicated for pba. when the trial results came out several years ago though I remember my doctor saying she thought people with bulbar symptoms starting should take it. I haven’t heard anything lately though. It is very expensive and virtually always needs a prior authorization. Some people get it compounded I think which is expensive but not quite as bad. As always ask the neurologist. As Laurie says there are cautions for people with other medical issues. Any swallowing help is transient and probably helps mostly at the beginning

 

[DW96]

My neuro prescribed it, sent it to my pharmacy and same day it was ready; I only had to pay my $20 copay. So no prior authorization needed, thank goodness. Could just be my insurance covers that.
I think I'll start tonight at bedtime since it's the weekend. Hoping it will help with PBA and some people have mentioned some speech improvement

 

[jethro]

nuedexta isn't available everywhere. zoloft is a cheap supstitution, but very effective (at least for me) and with no or minimal side effects. althougth clasified as ssri, mechanism of it's action is not fully understood. obviously it works through different pathway effectly. it works for me perfectly. i have no problems with swallowing and breathing, but can't speak. no more tears since i use it.

 

[Nikki J]

Of course the best medicine for you is one you can get. Does zoloft help you with the other part of pba - inappropriate laughter? The crying is annoying and embarrassing but the laughing can hurt others if you laugh when they tell you something sad that happened to them.

 

[jethro]

@nikki i can't claim that it helps with laughing, cause i allways had such episodes. i always laugh, but i never cried until i had als. hence i experiment with l-tryptophane+zoloft. my neuro asked me is it interchangeable, if i cry/laugh, do i know why/any reason. am i supposed to follow such an expert? i dismissed them all.

 

[lisatsmith13]

Jo

 

[DW96]

well I definitely laugh inappropriately and can't stop. I took Nuedexta on Friday night and woke up to a bloody nose, so that kinda scared me into taking it again Sat night. I will try again and watch side effects carefully. I feel bad because my nephew & niece were being naughty and their Mom was trying to yell and get them to stop and I was laughing along with their naughtiness. Then my nephew doing his homework saying cute things and I'm laughing at it. I had to leave the room, so embarrassing. And at work everytime the guys say something that's only mildly funny, I start and can't stop, and I sound like a hyena with laughing and crying. I had a bad crying episode in front of my nephew & niece and I never wanted them to see me like that, I ran to the garage for privacy but the kids followed my brother after me. They're all hugging me and rubbing me, and I still couldn't calm down. I've had that happen at work too in front of all the guys in the office and I had to go out to my car and they would each come out to me and try to tell me they were there for me and calm me down. But it took like an hour

 

[Nikki J]

My sister had all of that. Nuedexta helped her a lot. I hope it does the same for you. The hyena thing is absolutely classic. Not that it is much comfort but it is a symptom you can’t help any more than you can help a weak limb or poor swallow or speech