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Vikman

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Joined
Sep 18, 2015
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59
Reason
Lost a loved one
Diagnosis
09/2015
Country
US
State
CT
City
New London
This was on the front page of News

"CNS is pleased to report that the recently completed Nuedexta ALS treatment trial was a resounding success. The nationwide study, conducted at seven NEALS research sites, convincingly demonstrated that Nuedexta can enhance speech and swallowing in ALS patients and facilitate their ability to control their oral secretions. The results of the trial will be presented at the upcoming International ALS meeting."

Will be interesting to see the results.
 
Oh hope this is true. It validates reports of PALS if so. It would be great if there were an added indication so it would be easier to get
 
That would great if that happened. My dad has an appointment with his doctor on Tuesday, going to try to get a prescription for it even though he doesn't have the symptoms(PBA) Nuedexta has been approved for.
 
Will he um exaggerate if you tell him to? Doctor might prescribe but many insurance companies have a prior authorization for this and if you don't have the approved indication they won't pay. It is not cheap
 
Im hoping he will! If not then next appointment ill just tell him he has those symptoms. Is there an OTC alternative?
 
Last and lots of cough syrup. Dextromethorphan.
 
My husband (Randy) has been taking nuedexta since 9/08/2014,he can still swallow some but is on another medicine for his saliva...what I think it helps most with his the crying and laughing out of the blue and the mood swings..to be honest I don't think I would be able to deal with this without him taking it..his mood is a lot better because of this magic pill..no meanness .

I am not saying by no means that anyone living with this monster doesn't have the right
to be angry,by all means you have every right to be mad as all heck,but by taking this
medicine my Randy is able to cope with it better and if it makes it more tolerable then
I am so thankful that he can still take it and that they have found a way for it to be
perscriped to him.

For whatever reason anyone that needs this medicine I hope your experience with it
is as good as ours.

Hugs and love to all our fellow warriors. Randy has not been able to speak since Febuary
 
Greg is right dextromethorphan is the only thing OTC you might try if you can't get nuedextra but it is only one component so try to get the prescription. Andycap my sister found great relief from the lability with nuedexta as well though she was never mean thankfully. I don't know if it slowed her loss of swallow or speech at all but a lot of PALS say they can tell it helped
 
I so wish it was available in Australia as Chris would have really benefited from it. He wanted to try it, but wouldn't try an OTC dextromethorphan ... part of his FTD IMHO. It was obvious that at least trying one of the components would be worthwhile when he wanted the full drug, but he just jacked up that if he couldn't get Nuedexta he wouldn't try anything.

Thanks for sharing these results!
 
Nuedexta really kicked up my spasticity, although that is not a documented side effect. Can't take it. Trying Elavil now instead.

Deb
 
Last and lots of cough syrup. Dextromethorphan.

Agreed. Also the other active ingredient in Nuedexta is Quinidine which as I understand it is mainly to keep the body from processing the Dextro out of the body too fast.
 
I have been on Nuedexta for two weeks now. It has eliminated my emotional incontinence. No more choking up at the wrong time. It has also greatly helped my voice. I have bulbar onset ALS, and two weeks ago, no one could understand me. Now, it is much better. And better swallowing too. The dosage was on pill a day for the first week, then two a day. When I went to two a day, my tinnitus went crazy. I went back to one a day, and the tinnitus calmed down and the results were the same. I am somewhat worried about the long term effects of using it as a maintenance drug.

BTW. the active ingredient is the same as in a popular cough syrup, R**** DM.
 
Robitussin DM also contains another drug but you can get the single ingredient dextromethorphan over the counter
Nuedexta is 2 ingredients though, the quinidine significantly improves absorption so if you can get nuedexta it is worth it
 
I have been on Nuedexta for two weeks now. It has eliminated my emotional incontinence. No more choking up at the wrong time. It has also greatly helped my voice. I have bulbar onset ALS, and two weeks ago, no one could understand me. Now, it is much better. And better swallowing too. The dosage was on pill a day for the first week, then two a day. When I went to two a day, my tinnitus went crazy. I went back to one a day, and the tinnitus calmed down and the results were the same. I am somewhat worried about the long term effects of using it as a maintenance drug.

BTW. the active ingredient is the same as in a popular cough syrup, R**** DM.

Two questions..... Has it affected your balance at all and do you have less saliva?
 
I am recently diagnosed with ALS
I do not h ave all the symptoms, but I know they are coming.
I found out about Lunacin and now Nuedexta.....Have any one tried Lunasin?
 
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