Anyone currently on Nuedexta?

[Serenity]

Good morning to all. Just wanted to ask if anyone is currently on Nuedexta and if it has helped with PBA, and the uncontrollable crying/laughing. Any side affects? (I know everyone responds differently)

I have Bulbar Onset, and as my voice continues to decline, I really have been struggling holding it together at times. I did try 2 different antidepressants ( a SNRI and SSRI ), but just could not handle the side affects ( nausea and fatigue), and both caused uncontrolled trembling in my jaw, so had to go off of them.

I would say my crying and laughing is not at "inappropriate" times, but is exaggerated where even just a thought can get me crying very hard, or something mildly funny, gets me laughing hysterically, so this is getting to be quite embarrassing and hard for others to see happening. So, I'm thinking this is more PBA related, more then just depression.

I just wanted to get other people's opinions if it has helped them or not (before I ask my Nuerologist about it). Web MD has both good and bad reviews from people who have tried it, and unfortunately I am very sensitive to medications. I am also on a blood thinner (eliquis), so not sure if this is something I can even take, is possibly why my Nuerolgist has not even suggested it yet, not sure...

Thank you.

 

[Nikki J]

I know you asked for currently taking and I do not ( yet). My sister took it though. It definitely helped her pba. She said it was the one med she would choose if she could only have one. I do not believe she had any side effects It has also shown some transient help for bulbar symptoms both anecdotally and in a study

 

[Serenity]

Thank you Nikki, appreciate the response, and glad it had helped your sister. It is definitely a difficult condition to go through

 

[lgelb]

Nuedexta can increase Eliquis levels so you would need to be monitored and watch for signs of bleeding as you might need a dose adjustment. However, the interaction is classified as "moderate," which usually means it is not an absolute contraindication and the interaction is not super common.

 

[Serenity]

Thank you for that information Igelb. I am on a lower "maintenance" dose daily of the Eliquis, so hopefully that would help as well. I am going to send a message to my Nuerologist, to see if she would recommend I try it. I don't like to bother her too much, esp. since I've already tried 2 different antidepressants that I just couldn't handle, but for my own sanity, I think I need to at least try it.

Thank you again.

 

[rmt]

My husband was on Nuedexta and it was a game-changer for his psuedobulbar issues. It made a huge difference and improved his quality of life considerably. He didn't have any side effects (at least he didn't complain about any).

 

[Serenity]

Thank you RMT for your response, and glad it had helped your husband. So sorry for your loss.

 

[bettyboop]

Just fyi, Neudexta is VERY expensive. Check with your insurance to see what you're getting into costwise.

 

[Nikki J]

Any of us on medicare part d ( many pals) have an oop max of 2000 this year as long as it is a covered drug. If you have private insurance look into the nuedexta copay assistance program

 

[Trippy]

I’ve been on a half dose of Nuedexta for several years and it helps a lot with the PBA and also swallowing. I was recently out of it for about ten days and I noticed sloppier swallowing and had a crying fit. Your symptoms sound like PBA to me. I thought it would go generic by now to make it cheaper but it hasn’t.

 

[Nikki J]

Trippy. Supposedly it might go off patient August of next year. Generic doesn’t always make for great savings but we can hope

 

[Trippy]

I guess hope is all we’ve got

 

[Serenity]

Thank you for your responses. I am waiting yet to see if my insurance will approve it, and what my cost will be...

I am no longer working, and applied for SSDI, but it was denied, so have filed the 1st appeal, and waiting on that decision yet, so for now am on Cobra, so have the health insurance I had with prior employer....

Trippy, glad to hear the Nuedexta has helped you. So you just take it once a day ?

Sure hope I hear something soon and can get started on it.

 

[Trippy]

Yes, once a day Serenity. One does the job for me.

 

[Serenity]

Awesome. Do you take it in the evening or morning ?

I just got it approved, and picked it up from the pharmacy. Pharmacist said to take the first dose this evening (can cause drowsiness), and instructions are one a day for 7 days, then increase to twice a day, so we'll see how it goes ! I am really hoping it helps, and that the side effects aren't too bad.