My daddy got bulbar ALS - and a question about Nuedexta...

[NotMyDad]

Until two weeks ago we were hopeful that it was 'only' a progressive bulbar palsy. But no, it's ALS - he's been diagnozed about a year after his first symptoms. He lives in Poland, and I am here in the US. It hurts so bad to be that far away from him... I am utterly hearbroken...

His symptoms are getting worse. I only see him through Skype and now most often can't understand what he says. Those who are right next to him - can still understand, but the disease is progressing. He's got full blown swallowing problems, too, with some serious scares when he seems to choke...

I've been active on the Polish ALS forum for a while, and just started to read the forum here yesterday. I read so many great things about Nuedexta, it gave me some hope...

But then I found out right away that this drug is no longer available in my country. What a horrible disappointment!

And here is my question: is it ever possible to get medication here in the US for a patient who is overseas?
My intuition tells me it's not possible at all, but I thought I could at least ask.
I'd be grateful for any advice you could give me.

 

[affected]

I'm sorry about your dad's diagnosis.

I'm in Australia and we can't get Neudexta either. Does he have emotional lability, or were you hoping it might help his swallow for a little while?

I would presume it would be illegal to send it into a country that does not have it available for doctors to prescribe.

 

[NotMyDad]

Thanks, Affected.
How crazy is it that the drug is not available.
And it used to be avaialable in Poland, too, but not anymore...

He does get uncontrollable laughter a bit, but I would most likely want to get help for him with his swallowing problems.

I know patients in Poland are able to get GM604 from the US - while the drug is not yet legal in the US itself. So sometimes those weird things are legally possible...

But I am afraid you may be right in this case :-(

 

[Nikki J]

Sorry no. The only way we can get nuedexta is if our doctor prescribes it to us. It is illegal to share medication even in the country. The GM 604 is a completely different mechanism and depends on compassionate use regulation in your country

Can you get guiafenesin? Some people find it helps. It is the helpful part of nuedexta but the quinidine helps it metabolize properly. Still if you can get it try guiafenesin

 

[NotMyDad]

Thank you so much, Nikki, that's what I thought.
Thank you for the suggestion about guiafenesin. I'll try to find out whether this would be an option - I never heard about it...

I appreciate your quick reply!

 

[Gorby]

Your father may be able to get a nuedexta-equivalent from a compounding pharmacy. Nuedexta is made from two readily available ingredients (dextromethorphan hybromide and quinidine sulfate). I'm not sure that it will help with the swallowing, but will likely give some relief from the emotional lability.

 

[NotMyDad]

Thank you, Gorby. My sister will talk to pharmacies and see what they can do.

 

[NotMyDad]

Actually, if I may ask: what exactly is a 'compounding pharmacy'? I wonder if they have those in Poland...

 

[NotMyDad]

I need help and was wondering you someone could help me here... It turns out that my father doesn't even have a good doctor - my sisters are still looking, but in my city no doctor wants to be his lead doctor. The one who diagnosed him says that she is only a hospital doctor, and can't take care of him other than when he's at the hospital... She told him to come back for more tests some time in the spring..
But what do we do now? How do we know when he'll need the peg, or BiPap, or cough assist? Last week he's been feeling nauseous and doesn't want to eat. He also stopped taking his supplements. How do we know that it's not because his night breathing isn't the way it should be? How can this be checked? It seems that my family needs to know what to do independently of doctors, because so far doctors are of no help.
I'd be grateful for any advice you could give me...

 

[Nikki J]

Your dad is in Poland? I hope someone here can help but I expect you are asking on the Polish forum you found as well? I am sorry you have to search

 

[NotMyDad]

Yes he's in Poland, and I'm in the US. I ask on both forums... The Polish forum is very silent, and I haven't found anybody from my parents' city...