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Trippy

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Does anyone take this drug as needed, for example when planning to be around people, etc. or take it on a different schedule than manufacturer recommendations? I did a search but couldn’t find any information.

I started a half dose (one pill) last week and within 24 hours noticed a definite improvement in swallowing and speech. However also within 24 hours, increased spasticity and other unpleasant side effects. I skipped yesterday and today and notice things reversing but some lag time on improvements disappearing, which is hopeful.

I want the benefits from this drug but not at the expense of decreased mobility. My neurologist says keep on the half dose and use Tizanidine. She said she doesn’t know if Nuedexta would be effective less frequently.

I’m beginning to think there isn’t enough knowledge about this drug for doctors to prescribe outside manufacturers guidelines but I’m inclined to experiment on my own and take it on a less frequent schedule than a daily half dose.

I’d appreciate anyone’s experience outside the normal dosing. Thanks.
Kathy
 

Kristina1

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I don't know about using it as needed but I do have an interesting kind of related story-- When I started Nuedexta I saw quick and significant improvement in bulbar symptoms, especially my speech. After a few months this benefit seemed to wear off, but I was still taking it daily for PBA. Then I ended up needing to go on several meds for an issue unrelated to ALS. There was concern about liver strain or something and my neuro had me temporarily go off any non-essential meds and we included Nuedexta on that list, since while treating PBA is nice, it's not health essential.. So I was off Nuedexta for maybe 6 weeks. When I restarted it an improvement in my speech happened again! That was quite a while ago, and has again worn off.. But it made me wonder if Nuedexta could be one of those drugs like certain vitamins that you have to cycle on and off for best results.
 

Nikki J

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That is really interesting Kristina. Do you have a sense whether things accelerated when you were off it? I am wondering if there was a slowing effect even when it stopped obviously helping and if overall you think the cycle off put you at a better place now overall than you would have been before. The emotional lability is horrid but if you are looking at that vs speech I think many of us would choose a chance for a bit more useful speech? Have you considered another cycle ? What does your dr say?
 

Kristina1

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Hey Nikki, so here's how I perceived it-- Before starting Nuedexta my speech was on a slow but steady decline. When I first started Nuedexta my speech got noticeably better (husband, family all noticed). It kind of plateaued at that "better" spot, not improving more, but also not declining, for maybe 4-6 months. Then it started a slow decline again, got back to where it was when I started, and continued slowly declining. I went off the drug for several weeks, during which point that slow speech decline continued. I did not perceive that the decline worsened when I went off. When I went back on Nuedexta my speech bumped up with another improvement, and again plateaued there for a while before declining again.

My perception of events could have some accidental bias, there's no speech tracking data to back it up, but that's how it seemed to me. I have considered cycling with it on purpose, but haven't discussed with my neuro yet. I'm not sure she'd approve. Probably for liability reasons- but in the past she's been pretty toe the line in terms of following FDA protocol. For example, she doesn't want me trying things off label.

Ironically, while I take Nuedexta for PBA, it only minimally improves my PBA. I still struggle with controlling myself from inappropriate laughter in particular. The drug helps, but not as much as I had hoped it would. It has helped my speech, swallowing, and saliva more than my PBA.
 

Nikki J

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Thanks Kristina. If you decide to try let us know how it goes.
 

affected

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Really interesting stuff Kristina. Maybe do what your gut tells you with the Nuedexta and tell your neuro later or not at all? Please do keep us updated tho!
 
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