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jpsteeler99

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Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
I just wanted to let everyone know that Neudexta is worth a shot if you can get your doctor to prescribe it. I have a noticable improvement in speech, not perfect but much better. I might have started to have some swallowing issues before starting Neudexta(very minor), they are gone now. I had some minor emotional liability, all gone. I had to tell my dr that I was having emotional liability to get the prescription. They would not prescribe it for swallowing or speech problems. It is very pricey($800 per month) but if you have insurance, give it a shot. My dr even had free samples they gave me that I took for two weeks. There is a clinical trial happening right now to test these effects. Don't wait for the trial, get it now. Just say your having emotional liability and they will prescribe it. I would be glad to answer any questions......
 

Nighthawk

Senior member
Joined
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Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
I have a prescription for it also. My Neuro prescribed it to me during my last visit to the Clinic and he prescribed it for emotional lability specifically. However, its high price was a deterrent for me to buy it at that time. It looks like all the few ALS medications out there are very pricey (e.g.: Rilutek, about $1000/per month).
Although, if my insurance helps me somehow with the expenses, I might give it a shot.

Thanks for posting your experiences with this drug, though.

Regards,

NH
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,459
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
NH my sister says it is the only thing that has actually helped in a noticeable way. It definitely helps the lability for sure. If you can possibly afford it try it
Best wishes
Nikki
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
Thanks Nikki, I will keep your advice in mind.
My occasional outbursts of emotional lability are mostly laughing inappropriately than crying.

NH
 

Barbie

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Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
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State
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orlando
My husband took it and it really helped tremendously (emotional lability). he stopped taking it because it made him very drowsy. he is on Medicare with a script program--it was under $100 out of pocket.

B
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
Barbie,

Really? I am on Medicare as well and have a script program too so, Nuedexta shouldn't be much for me out-of-the-pocket then. My fear was having to shell $800 out of the pocket for this drug. Is it tabs or capsules? I have hard time moving gelatin caps. in the mouth for the tongue problems but tabs should be easier or at least they can be crushed to powder using a pill crusher that my CALS can buy at any drug store.


Thank you.


NH
 

Barbie

Extremely helpful member
Joined
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Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
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City
orlando
NH
Yes, if i recall it was $65 or$95 per
month. He stopped taking it a year ago. He has welcare script with his medic are.
 

rjp0508

New member
Joined
Mar 7, 2013
Messages
5
Reason
PALS
Diagnosis
08/2005
Country
US
State
MA
City
Hingham
Thanks for posting. How long did it take before seeing improvement? Any side effects?
 

Barbie

Extremely helpful member
Joined
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Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
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City
orlando
His pills were capsules--so you could open them and mix them with applesauce. my husband saw an improvement in a short time. he said he felt drowsy and weak on it, and stopped taking after about a year.
 

jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
They are capsules so you can open them and eat the powder. Doesn't make me drowsy. Maybe some slight weakness but that could be simply my progression. The speach benefits outweigh the weakness.

NH. Check with your Neuro for free samples. Mine gave me a 4-week supply for free to try it. Make sure you tell them it is for emotional liability even if you don't have it. I'd be curious to see if it helps you with swallowing the capsules. I don't have that problem yet and hopefully the Neudexta will keep it that way. I will say that I was having some minor issues getting big pills down and that has not gotten worse during the last 3 months on Neudexta. I am on the DP as well and swallow 30+ pills a day.
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
His pills were capsules--so you could open them and mix them with applesauce. my husband saw an improvement in a short time. he said he felt drowsy and weak on it, and stopped taking after about a year.

Thanks for the information, Barbie.
Now I know it comes just as capsules but can be open and mixed with applesauce. Great!
That's good for me as it's become a chore to swallow tablets and caps.

NH
 
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