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jellis86

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Joined
Jun 22, 2012
Messages
256
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
Hi all,

I'm probably beating a subject that has been discussed several times....but has anyone had any luck with using dextromethorphan without quinidine?
I was taking a teaspoon a day, which is close to 30mg, for a few weeks until my primary Neurologist told me to stop. He said dextromethorphan contains chemicals that can affect the mind, kind of like taking a mild narcotic.
But in all the information I have found online says it's safe if not abused.
Has anyone used dextromethorphan to improve speech or swallowing? I swear my speech was better when I took dex, but now I'm thinking I was just hopeful.

I see that Neudexta is in a clinical trial to see if it will improve speech/swallowing.

Thanks...

Joel
 
Hi Jellis86,

There are differences between Dextromethorphan alone (as active ingredient in cough syrups) and Nuedexta.

Nuedexta, on the other hand is a combination of Dextromethorphan and Quinidine.

The main purpose of adding Quinidine to this drug (Nuedexta) containing Dextromethorphan as the ACTIVE INGREDIENT is that Quinidine competitively inhibits the metabolism of Dextromethorphan catalyzed by enzyme CYP2D6 in order to increase and prolong plasma concentrations of Dextromethorphan.

Taking Dextromethorphan alone wouldn't achieve this, as Dextromethorphan alone is rapidly metabolized by enzyme CYP2D6 and thus, does not have the time in the plasma to achieve a concentration that could produce effects on Bulbar problems caused by ALS such as emotional lability and swallowing.

I hope this helps on your choice.

Regards,



NH
 
Nighthawk - Just want to thank you for the technical explanation on this and many other subjects. Very helpful to those of us who don't have the skills or patience to do the research ourselves.
 
You are very welcome, Old Dog.
That's what we are here for, to help and support each other.

Take care.

NH
 
I started out taking Dextromethorphan in a cough syrup and saw improvements in speech and swallowing but it was very modest. This led me to pursue the Neudexta prescription and I am so thankful I did it. My speech is much improved, although not perfect, noticeable enough to continue taking it.
 
Nighthawk....thanks for the information. It's pretty much what I figured was the case, but taking dex alone seemed to improve my speech for the short term, 3 or 4 hours. But again, maybe more hopeful than reality?
I am going to ask about Neudexta again. last month, when I asked one of the neurologists at Mayo, he said, it's too expensive for what it is.
But if it will even improve my speech by a small amount, it would be worth the effort of asking about it.
Obviously with a trial starting right now, there must be some slight evidence that it improves speech and swallowing.

jpsteeler99.....how bad was your speech and swallowing beforehand and how much has Neudexta improved it? Maybe in a percentage type estimate.
Thanks
 
@Jellis86,

Just to remind you to make sure that when you ask your Neurologist about giving you a prescription for Nuedexta tell him/her it's going to be used to treat emotional lability.
Do not tell him/her it's going to be used for speech and/or swallowing problems as some Neuros would refuse to write a prescription since Neudexta has been approved for emotional lability only.

I know there is a Nuedexta drug-trial being run right now where researchers are testing it for ALS swallowing and speech problems (part of the Bulbar onset) but until it's been proven that it improves these two problems, Neuros might refuse to prescribe it just for that. I think Jpsteeler99 mentioned this in another thread. Just to let you know.


Take care.


NH
 
Not to keep this thread alive, but I was doing some research and taking Amitriptyline and Nuedexta together is risky and NOT because of the dextromethorphan. Although Dextromethorphan and Nuedexta can create a possible habitual effect, it’s not life threatening.

However, Quinidine reacts with the Amitriptyline. It slows the absorption of the amitriptyline which can cause levels to increase in the blood stream which in turn may cause heart issues, especially if you are prone to that in the first place.

I take amitriptyline for emotional and excess saliva issues. It does help with saliva to some extent, but I'm not sure it does anything for my emotional well-being. I still have emotional lability since being on it.

So I would have to be taken of amitriptyline before taking Nuedexta. It's either that or EKGs every few weeks.

If Nuedexta really helps with the lability issue, it “might” be worth it, to me. There are other drugs that can help control saliva. But if it improves speech at all, it would really be worth it.

I will be talking to my neurologist sooner rather than later about the switch. Of course I would add that I want it for emotional lability and not speech or swallowing.
 
@jellis86:

As far as I'm concerned, Amitriptyline was prescribed to me by my Neuro at the ALS Clinic exclusively to threat excess saliva (drooling). However, the feeling dizzy, drowsy, or tired side effects just put me away.

I know it has other uses besides of treating drooling. Many uses, I would dare say.

But, as far as I know Amitriptyline, is not used to treat Emotional Lability on PALS (like myself) with Bulbar onset.
When I told my Neuro at the Clinic if he knew about a drug that might be effective to treat those outbursts of uncontrollable laughing/crying he immediately gave me a prescription to purchase Nuedexta. He didn't suggest Amitriptyline.

Dextromethorphan (the active ingredient of Nuedexta) has the ability to cross the Blood-Brain-Barrier and exert its effects in the Bulbar region so it can decrease those Emotional Lability problems.
Quinidine is just added to that formulation to help keep Dextromethorphan the longest in body plasm so it is not metabolized so quickly and it can stay longer exerting its effects on the Bulbar region.

In fact, SOME PALS have even reported that Nuedexta has also helped them with swallowing problems and controlling excess salivation as well.
That's why the company that manufactures Nuedexta is conducting a drug-trial to see if besides helping control Emotional Lability that drug could also help with swallowing problems and drooling. If that is confirmed on the trial, then this drug would be a wonderful addition for PALS with Bulbar onset because it would help control 3 problems with just one active ingredient.

Some PALS have also reported some marginal gains in speech but not as good as pre-ALS.
Let's keep our fingers crossed and hope for the best on this Nuedexta drug-trail for the benefit of many PALS who need it.


Hope this helps.



NH
 
Nighthawk...thanks for the input.

I am going to talk to my neuro to see if I can be taken off of the Amitriptyline and get a scrip for nuedexta.

Do you have issues with excess saliva? Do you use anything or just put up with it?

Thanks again!
 
Nighthawk...thanks for the input.

I am going to talk to my neuro to see if I can be taken off of the Amitriptyline and get a scrip for nuedexta.

Do you have issues with excess saliva? Do you use anything or just put up with it?

Thanks again!

Yes, I have this truly embarrassing problem of excess saliva. Not as worse and as often as before, but it's still there.
The first time I mentioned it to my Neurologist at the ALS Clinic he gave a prescription of a drug named Glycopyrrolate. I bought it and tried it and, it indeed dried out my mouth, no more drooling while I was using it but, the side effects were quite unpleasant for my taste. It gave me fever, I had difficulty passing urine, I had to deal with constipation like never before, I had fever, also had a feeling of warmth and, like if all that wasn't enough, I also experienced weakness and tiredness while on it.
I stopped using it because the side effects outweighed the benefits of just controlling drooling.

He gave a prescription for Nuedexta but not for excess saliva but for Emotional Lability.
That was during my latest visit to the Clinic. I had been holding off on buying it because of the price tag ($800 /month) but "Barbie" wrote me on another thread here, that my Insurance should help me cover part of the cost because her husband's insurance did the same and he ended up paying just a fraction of the total cost.

I will try to buy it sometime these following weeks and see what it can do for me.
If, in addition of helping me with Emotional Lability, it also helps me with drooling, and swallowing, then welcome to my "drug arsenal".

In the mean time, for drooling, I've been trying 100% pure Papaya juice and it...well, somehow has done the trick.


Hope this helps.


NH
 
Even while taking the Amitriptyline I have saliva issues, most of the time while eating but sometimes while talking. I'm not even sure how much that drug has helped to alleviate it.

I have looked for 100% papaya juice and can't find it locally, but I do take papaya enzyme supplements an it really seems to help with thick saliva/mucus in my throat.

Thanks for the reply NH!
 
Hey guys,

husband was given some drops to put under his tongue for saliva (can't remember the drug--started with an A) and he had side effects similar to NH. He had also taken benedryl as well. we mentioned it to the doc, and he said they have the same active ingredient and too much can cause the side effect of kidney shutdown (trouble urinating). can be very dangerous! husband doesn't drool constantly or heavy except when he is coughing and choking. he has found that if he sucks a benedryl (!) it helps a lot, then he swallows it. taste yuck but works for him.
 
Hey guys,

husband was given some drops to put under his tongue for saliva (can't remember the drug--started with an A)

Probably atropine. That stuff really dried up my saliva when I tried it .
 
yes that was it! Thanks Brian

I get brain farts all the time especially with medication names...
 
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