Nuedexta or Compunded, Are they really effective? I'm desperate!

[bass86]

Hello to ALS forum - I have a father who's been developing symptoms of what we (and our specialist doctor) believe of pseudo bulbar affect
about two years ago, and now it's been developed where rest of our family is nearly traumatized. His laugh is uncontrollable and even he knows it well.
We've been meeting doctos, neurologist specialist within Toronto - taken this test and that, tried one type of medication after one another..
We couldn't see an improvement at all, which is scary... as if there is no hope in recovery or at least getting better than where he is at the moment.

With such symptom, my parents are limited with what they can do their boundaries.
They cannot even go volunteer in local church that they served for such long time - it's making their life so dry.

I have heard of this medication called Nuedexta a while ago (which is not available in Canada at the store front unfortunately),
but we couldn't try even compounding since our specialist wanted us to hold on to such medication.
However, with current situation where we are not seeing improvement with father, I believe it might be better for us to start investigating for compounding within Toronto.

But I'm interested in stories. Have any of you've been successful with such medication - compounded or not?
Have you went side effects?

Desperate one needs and looking for answer. Thanks! God bless you all!

 

[Nikki J]

My sister had really good results from Nuedexta. she had to switch to plain over the counter dextromethorphan at one point and found it helped though not as much. the combination is definitely more effective. If plain dextromethorphan is available in Canada you might try some while you try to work out compounding
I know people in the US have had it compounded so it is technically possible

i hope you can find an answer I expect our Canadian members will chime in

 

[nona]

I have been on Nuedexta for years except for about a month last year when I had insurance problems. That month was brutal. I cried all the time, and my breathing and swallowing were worse. Everything improved as soon as I restarted. In my experience, the benefits go beyond PBA. Good luck!

 

[Kristina1]

it helps me significantly, but does not fully eliminate my inappropriate laughter. ill take what i can get, pba is humiliating

 

[ARCG]

My pals has been taking it for four years, definitely helped with both uncontrolled laughter and speech/swallowing. He has been on the compound for a while.

 

[bass86]

Thanks for all of your answers!
If you start taking Nuedexta (or compound equivalent), is this something that you have to take forver?
On Nuedexta website, I see they have "12 week clinical program" so I initially thought it was 12 week thing, but most of people seems to taking it for many years and continously beyond.

 

[lgelb]

It only works as long as someone takes it. PBA may diminish or become less important at some point in the disease. Has your dad been diagnosed with ALS?

 

[bass86]

To be honest, he's not "officially" diagnosed of ALS yet, at least to his neurologist.
But symtomps are just dead on. And he's already on subscription of SSRI related medication prescripted by family doctor.

 

[lgelb]

I have moved this to the "Could It Be ALS?" subforum where this belongs.

An SSRI rx is by no means an ALS diagnosis, nor is your guess, as many readers can testify. If PBA has been his major issue for 2y, ALS is unlikely.

 

[bass86]

I see. Thanks for the reply. So ALS and PBA is not related?

 

[Nikki J]

Many people with ALS experience PBA but there are many people with PBA who do not have ALS. There are other causes
as Laurie says two years or PBA without ALS symptoms it seems unlikely to be the issue. I actually don’t know anyone whose ALS presented with PBA

 

[bass86]

Oh, I initally thought PBA was always related with ALS. Thanks for clearing that up for me.
By the way, happy new years to you all!